Rainy day. Poopie mood.

In writing about my three past OBs and reading about reproductive immunology and speaking with Lisa (who is Lisa? Wait? Has she mentioned Lisa before?), I’ve sort of answered my own question by now. With the only problem being that the answer is “get the testing done” which leads to two questions–by whom and with what money?

Oh…wait…the question.

After the twins were born, the OB who delivered them (who was the doctor on-duty that night at the hospital) sat down in my room and said she wanted to talk to me. It’s never a good sign, by the way, when a doctor sits down. The babies were IUGR (intrauterine growth restriction) which means that they stopped growing in utero. They discovered this at 34 weeks and they were delivered that day. What could have been a huge problem leading to stillbirth was averted due to careful monitoring. Let’s at least thank OB #3 for following the guidelines for monitoring twin births. I’ve heard stories of OBs who don’t.

IUGR is sometimes caused by a clotting disorder (thrombophilia). Thrombophilia can also impede fertility and cause miscarriages. I had told this doctor about my fertility history while in labour, and putting all clues together (problems with implantation, IUGR babies), she told me that thrombophilia was a possibility. She said I should be tested for this because it’s important information to know not only if I want to get pregnant again. Thrombophilia can lead to other health problems later in life. So there you have it–go have fun with your new kids and try not to think about it!

When I went to the new OB, he laughed at me when I said that I wanted to be tested for a clotting disorder. He told me that reproductive immunology wasn’t real science and that I didn’t have a problem. Really? You can diagnose that with just your eyes? Amazing. But I’d still rather have a blood test.

Paz, who I’ve mentioned before (the chickie who kicked off Common Thread) was the first person I knew who benefitted from reproductive immunology and I started poking around to see if some of these things could apply to me. Then Lisa (oh…here’s where she’s mentioning Lisa) sent me this email:

My RE tested me after our second failed cycle and found elevated levels of IGM which may or may not mean a potential problem. He put me on Lovenox and baby aspirin for the remaining three cycles (which obviously did not help) but then my RE at Cornell told me he didn’t believe in the whole immunology thing and wouldn’t prescribe Lovenox. When I went to my OB once I was pregnant, he saw the previous test results and asked why I wasn’t on Lovenox. He sent me to a hematologist who put me back on it, but by then I was 12 weeks pregnant. I learned first hand how controversial the whole issue can be in the medical community. One thing I learned through this whole process: medicine is an art, not a science.

Lisa has pretty much the most rockin’ Secret Hope Story ever. She was over this week and we were talking about the controversy surrounding reproductive immunology. I had no idea that this division existed in the medical world, and the varying reactions made sense. The doctor who took it very seriously and urged me to get tested. The doctor who laughed it all off. And the ones in between who shrugged their shoulders and said, “maybe.”

And the patient in the middle who is circling the drain of what ifs. Who is admittedly a bit of a freak about worrying about the future. Early on in the relationship, I took Josh on an 18-mile canoe ride. Trapped in a boat on still water, he paddled hard to get back to the car and away from my incessant what ifs that I was using to see if he was husband material. Could he handle what ifs day in and day out? How well did he thrive when peppered with what ifs that involved nazis taking over America and forcing him to choose between me and every other loved one in his life?

That established, what if there is something to reproductive immunology and a simple blood test holds the key to whether I try for a few months or a few years to conceive again? What if taking heparin and some aspirin can keep another child from being IUGR (and two pounds at birth)? What if this knowledge can keep me from other medical problems such as a blood clot later in life? The answer is simple: take the blood test.

BUT.

Do I go to the OB who has already laughed me off and ask him to order it? Would he be aggressive and order the right lab work when he seems to have little respect for reproductive immunology? Do I make an appointment with my RE and jump back to his office even though I’m not completely ready to be back at the RE and I have no idea where he stands with this? Do I skip all known doctors and go straight to a hematologist? Two options not on the table–going to the doctor who suggested this in the first place since she no longer works at the hospital OR switching OBs.

I know most of you are screaming, “run don’t walk” when I tell you my OB laughed at me. Didn’t I learn anything from my three previous OBs? I promise you that I did. I stay with my OB for two reasons: (1) the RE recommended him because he refers out quickly to the clinic. He takes fertility issues seriously and when I met with him, he recommended only trying for three times on my own before returning to the clinic. (2) When you start throwing out OBs over every snicker, you’re going to be left with your vagina hanging in the wind because OBs altogether are a very smug group of know-it-alls. It could be the “playing G-d” status they have of bringing life into the world. But he took my other concerns seriously and spent over an hour speaking with me at my first appointment and pap smear. Can I blame him if he is siding with the anticontroversy on a controversial topic? And to be frank, I’m just tired. My standards have become too high for an OB. I want them to gallop up to my doorstep on a white horse and examine my hoo-haa while I remain in bed, watching the Food Network. And…well…the short of it is that I am sticking with this OB for the time being.

The next BUT.

If insurance is not going to pay for this, do I push for the tests? I know the knee-jerk answer is “yes.” But at the end of the day, I’m not a doctor with a plethora of additional information about hormones and blood disorders at my fingertips. I earned my honourary medical degree from the stirrups, which is obviously different from taking actual medical tests. Tests shmests. That said, if a doctor says it’s not necessary, do I push forward and say, “it is!” without proof of negligence over my health care?

Because at the end of the day, we’re passing the financial corner of the Bermuda Triangle of Infertility and the triangle is threatening to swallow us alive if we test these waters. We just don’t have the money. So I am also looking for advice from people who have had this type of blood work completed and had insurance cover it.

Which sucks. Bigtime. To make medical decisions based on money. I know all people who aren’t independently wealthy consider the financial aspects when making medical decisions. But…well…I just want it to be different.

As I said, writing about it this much has made me figure out my next step somewhat. At least for the time being unless you have advice–by all means, pass it my way. And by figure out the next step, it is the idea my husband came up with last night. Go to my GP. Someone neutral who probably knows little about reproductive immunology. Who will refer me to a hematologist. So it
looks better for insurance reasons. So the person doing the diagnosing is actually a doctor rather than one who plays one on the computer. Appointment is next Thursday. Come with me as we delve deep into the immunology controversy. Which makes this sound a bit less like a soap opera and a bit more like one of those sensational news shows. But whatever. I mean, it’s not like it’s a big deal. It’s JUST MY HEALTH!

Grrrr…

I didn’t have something happening twice today. Or in this post. But since there were three posts today and since I wanted to post one video, I felt like I had to have two of something as well.

Thank you to my brother for introducing me to this video. It’s what I watch when I’m trying to figure out the best way to kick apart someone after they ask me why I did fertility treatments since they’re so dangerous.

Creased Comics’ George Washington should not…by the way…be watched while at work. Those offended by foul language, cannibalism, hands burned by acid, willful neglect of British children, or cartoon testicles probably shouldn’t click on this link.

But it brings me so much happiness.

I used to have low bars to clear in order to be my doctor. Do you have a medical degree? Do you know which area my heart is located? Do you own a thermometer? I didn’t have any major medical issues, therefore I hadn’t given much thought into choosing doctors.

But now I woke up at 5 a.m. with my heart pounding. The anxiety hit as soon as I unjumbled my thoughts. What was I worried about again? Oh yeah–the fact that I couldn’t get pregnant. Thud thud thud. I would go down to the gym and try to run it off. But you can’t outrun infertility anxiety.

OB #2 called my house and apologized for the mix-up. He told me that I wouldn’t be charged for the visit (er…want to tell that to your staff who sent us bills for the next six months?). And he recommended another doctor–one who took my filthy HMO–that he had trained years earlier.
This is what I can say about OB #3: he moved quickly. He ran tests the first month we were with him, found my lack of progesterone, explained the reason for my nine day luteal phase (as well as those interesting 18 dpo charts), and referred me out to an RE. But…since every RE worth his/her salt has a waiting list…we could always try a few fertility drugs right here in the OB office…

And, come on, it’s like dangling cocaine in front of an exhausted grad student three days before exams. In all honesty, would you say no if someone offered you a little non-monitored Clomid? Or a round of progesterone. With no directions. Suffice to say, if I knew then what I know now, I would have waited. The problem is that the education I have now came from the mistakes I made along the way–the questions I didn’t know to ask or the things I allowed to happen. If I could do it all over again, I wouldn’t do those things. But I wouldn’t know that these things were detrimental to my journey unless I did them. As my middle school French teacher always chirped after one of these obvious statements: n’est pas?

I stuck with OB #3 through the pregnancy and the six-week post-delivery appointment. A misprescribed medication and my OB answering my complaint with, “well, you didn’t die” ended that relationship.

So what did I learn from my three OBs? Talk to a lot of people so you know the right questions to ask. Be assertive. Stick to your guns. Don’t tolerate someone blowing off your fears without explanation. Learning these lessons has also opened a world of doctors to me because I don’t need them to have a nurturing personality anymore. I could care less if they go home and say to their spouse: “you wouldn’t believe the psycho who came into my office today.” As long as they are giving me excellent medical care, running tests to diagnose problems, and taking my fears seriously, I’m fine going to them.

Then why am I throwing out my latest OB conundrum? The one that is nagging me day and night because I know what I have to do, but I’m balancing out three other elements (1) money, (2) ties to my RE, and (3) searching for a new OB when you’ve already seen the winners I’ve had over the past two years.

Which brings me (in the most convoluted way) to the question that lies at the bottom of my question: why can’t two doctors come to the same opinion?

And what’s the whole deal with reproductive immunology…

This and more in the next post. Damn this story is long.

…and now back to the program.

I spent the night with seven vials of blood in my refrigerator, which the nurse promised was just like having it at the lab. Except, you know, it was in your house. Next to a head of lettuce. And an open jar of mustard. And it’s seven vials of your blood.

I should explain that they gave me my blood to take with me because it was unlikely that they would be able to get another seven vials of blood from me the next day. I have only one good vein for drawing blood and it’s in my left arm. They’ve never been able to draw blood from my right arm without collapsing the vein. They’ve tried the back of my hand and once suggested a vein in my forehead. Regardless, once you draw blood from me, you best use it because you’re not getting another seven vials for quite a bit of time.

This is certainly not the most heartbreaking thing that happened on our journey, nor was it the most painful, or even the most bizarre. But it was this surreal turning point for me where our journey no longer resembled anything I ever imagined it to be. I thought we’d have this great conception story that involved a romantic trip to a bed and breakfast. And we were getting farther and farther from that image.

And I was freaking out.

The next morning, I gathered up my bag of blood and took it a few miles away to an HMO-approved lab. I walked in and tried to speak to the receptionist, but she told me to sign in and refused to listen to me. A few times I stood up again and tried to speak, but she cut me off and told me to sit down. I was getting extremely anxious because the blood had been out of the refrigerator for a long time. I finally pushed my way back to the front and tried to speak to her again. She snapped at me: “What part don’t you understand? You show up without an appointment and expect that you can push your way to the front of the line? Every person in here wants lab work. You need to wait your turn.”

“But I don’t need an appointment. I need to drop off blood.”

We went around like this several times with me repeating that I needed to drop off blood and she insisting that everyone in the room needed to drop off blood and I was now looking at a two hour wait.

I finally burst into tears, in front of the entire waiting room and held up my bag of McBlood. “But this has been out of the refrigerator for an hour and it will go bad if I keep sitting here.”

Can we say horrified? She finally realized that the bag I was carrying contained my own blood. I don’t know what she thought in that moment. That I stuck a butterfly needle in my own arm back at home?

She opened the bag and told me the blood was unusable. And even though I could clearly see that it no longer even looked like blood–it had separated into a watery substance and black clumps–I told her that she was wrong. She was wrong and the OB nurse was wrong and my insurance company was wrong and everyone waiting in the waiting room that morning was wrong and the fact that I had to go to work after dropping off seven vials of unusable blood was wrong and the fact that I couldn’t conceive was wrong.

I would probably still be back in that waiting room delivering my long list of what was wrong when an elderly lab technican from Sierra Leone came into the waiting room and put his arm around me saying, “please stop. I’ll redraw the blood. I can’t stand seeing you cry.” Which was–by far–the kindest thing that had happened in the last 24 hours.

He couldn’t draw blood, nor could the other technican who gave it a whirl. Five needle sticks and several yellowing bruises later and I wasn’t leaving until they drew this blood and ran those tests and told me if there was anything else I could possibly pass along to this child I couldn’t conceive. On the sixth try, they drew the blood and I left, crying the entire ride to work.

And the lab botched the tests. But we wouldn’t know that until after we had gone through the first two week wait. And then there was the second two week wait. And then there was the repeated tests when I finally reached OB #3.

Will her Jewish panel come back showing even more genetic illnesses she can pass along? Will OB #3 finally take her fertility seriously? Stay tuned for the conclusion of All My Not-Yet Children as well as the question at the end of this tunnel-like story.

Or perhaps this post should be labeled: Cautionary Tales of Doctor Shopping. This is a long idea. It may take me a day or two to think this through. But it has a question at the end of the tunnel. So bear with me.

Doctor shopping. I recommend it. Even if it did lead to me DRIVING HOME WITH MY OWN BAG OF BLOOD. You can’t help but shriek those words. Because…I mean…I drove home with a bag of my own blood in a white paper bag as if I had just gone through the drive through at McDonalds. My McBlood Vials.

Sometimes you guys write me and ask for advice and sometimes you guys write me with stories that completely freak me out about your medical care. And it all leads to the same place–don’t stop looking until you have a good doctor. The best you can afford or the best that is covered by your insurance. And by “best” I don’t necessarily mean the one with the best pregnancy results. I mean the one that fits your personality best. My current OB is not the best fit with my personality, but he comes with many other strings that tie me to my RE. And I’m not sure to sever or persevere.

My first doctor was the OB that I had for many years. She was usually fantastic–very thorough, very thoughtful. She was cautious–a good fit for me because I’d rather have someone err on the side of too many tests than miss something completely. She was kind–one time I was late and the nurse was going to make me lose my appointment as well as pay the copay. My doctor stepped into the receptionist’s bay and shook her head. “We’ve made her wait numerous times. And traffic happens.” Loved her.

But then things started to feel wrong with the TTC process and one day I called her about the fact that my charts often showed elevated temperatures long past 14dpo–sometimes 18–21 dpo. And she said everything was in my head. I sat down on a bench outside the food store while she told me that I was just too stressed out about trying to conceive and I needed to calm down and stop charting.

And that was the end of that OB.

Which is not to say that you should drop doctors if they don’t agree with you–there are plenty of times that I have been worried about something and a doctor has disagreed with me. The difference being that I can handle being wrong, but I can’t handle being ignored. Not when it comes to my health. She refused to acknowledge or explain what was happening on the charts. Which is what led me to choose a different doctor even though she had been a fantastic match for me for many years. Fertility is tied to time, and I didn’t have time for her to come around and decide to do some testing. I needed to find a doctor who would work with me to get to the bottom of the problem.

Bring in my second OB. He was my OB for one glorious day. One glorious insurance-botched day. I found a great doctor that everyone loved. His receptionist said that he accepted my insurance. She took my card when I came to the office and xeroxed it. We filled out paper work that stated my insurance. I think I was pretty upfront about my insurance.

The appointment was fantastic. He spent over an hour speaking with us. I spent the first half of the appointment shooting out my questions like an auctioneer until he told me to slow down. Relax. This was my kind of doctor. One who seemed to have nothing else to do but humour all of my “what ifs.” And I had a lot of what ifs.

He agreed that things looked strange on my charts and he ordered some tests to be done during the next cycle. Towards the end of the meeting, he told me that he wanted to screen me for a few more genetic illnesses since I tested positive for Tay Sachs. I called my insurance company from his office to clear the tests with them and they told me it was covered as long as I used a certain lab. I informed his nurse while she was drawing my blood and she said, “we wouldn’t participate with that lab. It’s a lab for HMOs. And we don’t accept HMOs.”

Screeeeeeeeeeeeeeeeeeeeeeeech!

One tear-saturated conversation later and I was being shown the door with the blood they had already drawn before they realized that I couldn’t be their patient. Even though we had spoken on the phone, even though they had xeroxed my insurance card, even though I HAD WRITTEN MY INSURANCE INFORMATION ON THEIR DAMN INSURANCE SHEETS, they had no idea that I had an HMO.

My husband had left during the discussion and was now circling the block since we had to move our car from its parking space on the street. I went downstairs with my McBlood and climbed into the waiting vehicle.

“What’s that?” he asked, pointing to the white unlabeled bag.

“My blood,” I told him. “Just drive.”

A cliffhanger–tune in tomorrow to hear what happens when you show up at a lab with a bag of your own blood.